The Second Session of the 110th Congress ground to a halt in mid December when Republican Senators refused to support a bailout loan to automobile companies. The sudden and deepening economic crisis, a lame duck President and Administration, Congressional and the Presidential elections and limited bipartisanship combined to make this Session of Congress fairly unproductive despite the enactment of a $600 billion economic stimulus package. There were a small number of new laws passed by the Congress and signed by President Bush that relate to disability policy. Those legislative victories are described in this report.
Most Congressional observers anticipated a difficult election year session, dominated by the war in Iraq. Instead, the post summer recess schedule was overwhelmed by the housing, banking and unemployment crises. State governments experienced ever increasing revenue loses due to spiraling unemployment, giving rise to many states beginning to scale back eligibility and access to disability services and supports. The Bush Administration refused to allow for a second stimulus package aimed primarily at job retention and creation and assistance to states.
A year long stalemate between the White House and the Congress on Fiscal Year 2009 appropriations for discretionary programs left all FY 2009 human services spending frozen at FY 2008 levels at least until March of 2009 under a Continuing Resolution. Since the Congress paid little heed to the proposed policies of the Bush Administration, the Administration attempted to make policy changes vie regulatory reform. Some of these regulatory initiatives were stymied by the Congress who enacted moratoria on certain rules modifications. Several of the rules would have adversely affected disability programs, primarily in Medicaid. As is usually the case, numerous bills aimed at improving disability policy began to work their way through the legislative process only to be derailed at some point. All of those bills will have to begin the legislative process anew in the new Congress.
The following report details legislative progress accomplished in the Second Session of the 110th Congress. The report also examines a number of legislative proposals that were not completed, primarily due to the ongoing White House/Congressional policy impasse. Legislation not enacted into law does not reflect the significant effort and dedication of The Arc and United Cerebral Palsy public policy operation. Instead, numerous legislative goals remain unfulfilled due to partisan gridlock and the economic emergency that absorbed much of the attention given to the economy, particularly towards the end of a Congress when much work is done to complete action on pending legislation.
With only 3.3% of the nearly 14,000 pieces of legislation introduced becoming law, the 110th Congress marks itself as one of the lowest productivity sessions in the past fifty years. This fact makes the enactment of disability-related legislation that much more notable, and is owed, in part, to The Arc and UCP's strong national and grassroots advocacy efforts.
As the Second Session of the 110th Congress has comes to a close, it's important to take time to reflect on our legislative victories. Despite a low overall number of bills signed into law this Congress, many important disability-related bills became law this year. In addition to favorable legislation, a number of regulations that will benefit people with disabilities and their families went into effect.
The Arc's two greatest legislative achievements in the Second Session of the 110th Congress took the form of restoring lost civil right protections and preventing significant cuts to the Medicaid program
Preventing Cuts to Medicaid
Moratoria on six proposed Medicaid regulations were included in the Iraq War Supplemental bill of 2008 (P.L. 110-252). Three of the proposed regulations would have cut Medicaid disability services by over $7 billion over 5 years: 1) the Rehabilitation Services Option Regulation would have cut day habilitation such as development disabilities skills training and communications skills training; 2) the School-Based Administration and Transportation Services Regulation would have prohibited all Medicaid payments for school-based administration and loss of this funding could have forced school systems to scale back on related services such as occupational therapy, physical therapy, and speech/language therapy; and 3) the Case Management and Targeted Case Management (TCM) Regulation which would have restricted coverage of transitional case management, such as assisting persons transition from institutional care to the community. The law puts the regulations on hold until April of 2009, allowing the new Congress to carefully consider each regulation and develop corrective legislation. It is also possible that the Obama Administration could rescind some or all of these regulations.
Civil Rights
The ADA Amendments Act (P.L 110-325), introduced by Senator Tom Harkin (D-IA) and Representative Steny Hoyer (D-MD), is expected to restore the workplace protections of the Americans with Disabilities Act of 1990 which had been eroded by several court decisions. The law redefines "major life activities" in ways that make it easier for people with intellectual, developmental and other disabilities to qualify for protections against employment discrimination under the ADA.
Mental Health Parity
The Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (contained in the Emergency Economic Stabilization Act of 2008 (P.L. 110-343)) was enacted. The law mandates that commercial insurers must set mental health insurance co-payments and treatment limits equal to those for coverage of physical conditions. It also bans cost-sharing requirements that only apply to mental health or substance abuse disorder benefits.
Other important laws enacted in the Second Session of the110th Congress will improve the quality of life for people with intellectual and developmental disabilities and their families in the areas of education, health care, housing, family support, transportation, and civil rights. They include:
The Diagnosed Conditions Awareness Act (P.L. 110-374), introduced by Senator Sam Brownback (R-KS), will increase the provision of scientifically sound information and support services to parents receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions for their children.
The Higher Education Opportunity Act (P.L. 110-315) enacts the most significant federal efforts to date to assist students with disabilities to access and succeed in postsecondary education programs. It includes groundbreaking provisions regarding inclusion, enrichment, socialization, independent living; and person centered planning in the development of the course of study. The law also bolsters teacher training in special education.
The National Affordable Housing Trust Fund Act, which was included in the Housing and Economic Recovery Act (P.L 110-289), will develop 1.5 million new units of rental housing affordable to very low-income and extremely low-income households. This law creates thefirst new federal housing production program specifically targeted to extremely low income households since the Section 8 Housing Choice Voucher program was created in 1974.
The Federal Railroad Safety Improvement Act (P.L. 110-432) reauthorizes Amtrak and requires Amtrak to report to Congress how they intend meet the 2010 ADA deadline to have all their stations accessible. It also authorizes such sums to help Amtrak finance the accessibility improvements
The Genetic Information Non-Discrimination Act (P.L 110-233). After a 13 year crusade, the Genetic Information Non-Discrimination Act (GINA) was signed into law on May 21, 2008 and has important implications to people with disabilities who could be subject to genetic discrimination, particularly in employment and health care coverage. GINA will prevent employers from engaging in discriminative practices including firing, refusing to hire, or otherwise discriminating with respect to compensation, terms, conditions or privileges of employment based on genetic information. Similarly, this bill will prohibit insurance companies, including Medigap, from basing eligibility determinations or adjusting premiums or contributions on the basis of genetic information.
The SSI Extension for Elderly and Disabled Refugees Act (P.L. 110-328). President Bush signed into law the SSI Extension for Elderly and Disabled Refugees Act on September 30, 2008. Individuals' rights to benefits under the law became effective on October 1. The law extends SSI eligibility for elderly and disabled refugees, asylees, and other humanitarian immigrants from seven to nine years. In addition, a provision of the bill will cover those who have already lost their SSI benefits. These individuals fled persecution or torture in countries such as Iran, Russia, Iraq, Vietnam, and Somalia and now meet the criteria for SSI eligibility based on disability or age.
The Arc and United Cerebral Palsy hope to build on these many successes with the incoming Congress and Obama Administration. Much remains to be achieved, but with the continued active participation of our network of hundreds of thousands of chapters, affiliates, members, and volunteers, we hope to achieve much of our Legislative Agenda for the 111th Congress.
As in previous years, the Bush Administration's Fiscal Year 2009 Budget Request favored defense spending over human services expenditures. Domestic discretionary spending would grow by less than 1%, while defense spending would increase by 7%. The Administration again proposed to makes large cuts in certain disability programs (e.g. Housing, Supported Employment) while freezing many others. A few programs (e.g. IDEA State Grant) would receive small increases. The Administration's budget called for large cuts to entitlement programs. For example, Medicare would be cut by approximately $178 billion over five tears while Medicaid would be cut by $17.4 over the same time period. The table in Appendix A compares the FY 2008 appropriations with the Administration's FY 2009 budget request for programs of interest to the disability community.
FY 2009 Budget Resolution
In early June, the House and Senate narrowly approved a $3.1 trillion Fiscal Year 2009 Budget Resolution. A Budget Resolution serves as the blueprint for Congressional appropriators to set funding levels for specific programs. A Budget Resolution is not sent to the White House for approval. The Budget Resolution adds $24 billion (approximately a 5% increase) to the Administration's budget request. The Budget Resolution contained no reconciliation instructions to Congressional committees with jurisdiction over entitlement programs. This means that the Congress was not required to make changes to programs like Medicaid and Medicare.
FY 2009 Appropriations/Continuing Resolution
Given that the Administration again clearly stated its intent to veto any FY 2009 appropriations bills sent to the White House with funding above the levels in the Administration's FY 2009 Budget Request, the Congress refused to replay the FY 2008 appropriations process where it was unable to override Presidential vetoes. Thus, while hearings and some markups on appropriations bills were held, only the Departments of Defense, Homeland Security, Military Construction and the Veterans Administration were enacted. The Congress then passed a FY 2009 Continuing Resolution that will keep all other federal agencies and programs operating until early March, 2010. Programs contained in a Continuing Resolution are frozen at FY 2008 levels.
The Social Security Administration's Limitation on Administrative Expenses (LAE) The current five-month Continuing Resolution (CR) did not contain an increase for the administrative costs of the Social Security Administration, despite the need to continue a major effort to reduce the length of time that claimants wait for hearings on their applications for disability benefits. SSA's administrative budget, known as the Limitation on Administrative Expenses (LAE), is level funded along with most of the rest of the federal budget until early March 2009, five months into Fiscal Year 2009. It is estimated that to maintain SSA's current level of services through FY 09 would require over $450 million above the FY 08 funding level. This amount covers the cost-of-living increases in staff salaries and increases in building rental and security services costs. Therefore, SSA is effectively operating at a loss for the first five months of the fiscal year. If the 111th Congress chooses to fund the remainder of FY 09 with a similar CR through September 2009, SSA may be in a position of requiring significant furloughs at a time when Baby Boomers are beginning to retire and many people with disabilities are already waiting for years for hearings on their disability applications.
Revenue Policy
Some tax adjustments were made in the Economic Stimulus package. No significant tax policies were changed specific to individuals with disabilities.
In addition to the enactment of the moratoria on several Medicaid regulations which would have reduced services to Medicaid recipients with disabilities, much work was done on numerous other disability related bills to impove Medicaid.
State Children's Health Insurance Program (SCHIP) - UCP and The Arc joined other disability, children's and health care groups in advocating for an expansion of the State Children's Health Insurance Program (SCHIP) to cover 10 million additional children and include a dental and mental health benefit. Despite bi-partisan support in both Houses of Congress, President Bush vetoed legislation to reauthorize and expand the program twice and the House failed to override his veto. The President signed an extension of the program through March 31, 2009 that provides sufficient funding to avoid funding shortfalls in 2008.
Community-Based Services - The House Energy and Commerce Health Subcommittee held a hearing on numerous community-based long term services issues in early January 2008. They included:
Community Living Assistance Services and Supports Act (CLASS Act), introduced by Senator Edward Kennedy (D-MA) as S. 1758 and by Representative Frank Pallone (D-NJ) as H.R. 3001.
Community Choice Act, introduced by Senator Tom Harkin (D-IA) as S. 799, and as H.R. 1621 by Rep. Danny Davis (D-IL).
Direct Support Professionals Fairness and Security Act of 2007 (H.R.1279), introduced by Rep. Lois Capps (D-CA) with Rep. Lee Terry (R-NE).
Improvements needed to the Home and Community-Based Services Option established by the Deficit Reduction Act of 2005.
Community Choice Act, S. 799/H.R. 1621 - The Arc and UCP have worked in support of the Community Choice Act which would amend Medicaid to mandate state Medicaid plan coverage of community-based attendant services and supports for certain Medicaid eligible individuals.
Empowered At Home Act of 2008, S. 3327 Senators John Kerry (D-MA) and Charles Grassley (R- IA) introduced the Empowered at Home Act, S. 3327, in July to make the necessary improvements to the newly established Medicaid Section 1915(i) State Plan Amendment Option for Home and Community Based Services (HCBS). Under S. 3327, states would be able to serve people with the full range of income eligibility allowed for people in facility-based settings. In addition, states would be able to provide the full range of services, including "other services" approved by the Secretary of Health and Human Services that can currently be provided under the HCBS waiver. In return, states would no longer be able to cap enrollment (or keep waiting lists for the HCBS option services) and services must be offered throughout the entire state. Further, the bill would protect (grandfather) those beneficiaries receiving services if the state should change the eligibility criteria in the future. S. 3327 has been referred to the Senate Finance Committee where both Senators serve and Senator Grassley is the Ranking Minority Member.
Home and Community Based Services - The Centers for Medicare and Medicaid Services (CMS) published proposed rules in the Federal Register to implement the Home and Community-Based State Plan Services. The new Section 1915(i) HCBS services are now available as an option to states for their Medicaid state plans as a result of enactment of the Deficit Reduction Act of 2005 in February 2006.
In addition, CMS requested comments on a white paper entitled Removing Barriers: Allowing 1915(c) Home and Community Based Waivers to Serve More than One Target Population. The DPC submitted comments on behalf of The Arc and United Cerebral Palsy. In it, CMS indicated its intent to develop regulations allowing states to mingle the targeted populations that they may serve under the Section 1915(c) Home and Community Based Waiver. In addition, CMS indicated an interest in establishing restrictions on the living arrangements considered acceptable for people receiving HCBS waiver services. The expected next step is that CMS will be disseminating an Advance Notice of Proposed Rulemaking (ANPRM).
Direct Support Workers
UCP and The Arc continued to work for passage of the Direct Support Professionals Fairness and Security Act (H.R. 1279). This legislation would amend the Medicaid program to provide funds to states to enable them to increase the wages paid to targeted direct support professionals in providing services to individuals with disabilities. The program is designed as an option to states and would provide an enhanced federal medical assistance percentage (FMAP) for five years to states to increase wages. The purpose of the bill is to increase wages and eliminate the gap between wages paid to private employees and wages paid to public employees in the state. In order to receive the enhanced FMAP, states would be required to submit a five-year plan and must assure continuation of the increased wage rate after the five-year period.
A major focus of efforts this year was to build bipartisan support for H.R. 1279. UCP and The Arc were involved in a national campaign to build support for this legislation and utilized their respective Action Centers to generate additional co-sponsors of the bill. In addition to the lead sponsors, Representatives Lois Capps (D-CA), and Lee Terry (R-NE), there are currently 130 other co-sponsors. A Senate bill was not introduced. The Senate in September did pass a resolution recognizing the important contributions of direct support professionals.
Housing
The House of Representatives unanimously passed the Frank Melville Supportive Investment Act of 2008 which reforms the Section 811 Supportive Housing for Persons with Disabilities Program and includes a demonstration project which will triple the number of units the program produces. A companion bill was introduced in the Senate but no further action was taken.
Family Support
Two million dollars were set aside in the FY 2008 Omnibus Appropriations Act to fund a National Clearing House and Technical Assistance Center for families of children with disabilities. The Department of Health and Human Services issued an RFP to solicit applicants, and the grant was awarded earlier this year. Although administered by the Administration on Developmental Disabilities, the family support clearing housing will serve a broader constituency not limited to families of developmental disabilities.
The Lifespan Respite Program, a $2 million set aside within the Department of Health and Human Services to support the Lifespan Respite Care Act (PL 109-442), continues to remain unfunded. The Lifespan Respite Care Act, which passed unanimously in both chambers of the 109th Congress, authorizes competitive grants to Aging and Disability Resource Centers in collaboration with a public or private non-profit state respite coalition or organization to make quality respite available and accessible to family caregivers regardless of age or disability. The law allows grantees to identify, coordinate and build on federal, state and local respite resources and funding streams, and would help support, expand and streamline planned and emergency respite, provider recruitment and training, and caregiver training.
Education
The Congress gave up early on reauthorizing the No Child Left Behind Act after it was clear that negotiations with the White House would be fruitless and that several factions within the Congress were also likely to reach an impasse. The Administration did publish new regulations concerning the Individuals with Disabilities Education Act (IDEA). The new rules alter how parents can refuse or withdraw their consent regarding placing their child in special education. The regulations also detail the conditions under which parents can be represented by non attorneys in IDEA due process procedures.
Social Security/Income Maintenance
Proposed rules to change the SSA appeals process The Arc and other advocates responded late last year to proposed regulations to change the SSA appeals process. While there were a few positive proposals, there were many proposals which raised very serious concerns. With the CCD Task Force on Social Security, the DPC urged SSA's Commissioner to not implement the notice of proposed rulemaking (NPRM) unless significant changes were made to protect the rights and interests of people with disabilities. On January 30, Commissioner Astrue announced that SSA was withdrawing the controversial sections of the proposed regulation.
Social Security Administration Limitation on Administrative Expenses - The crisis in funding the Social Security Administration's administrative budget continues and the press continues to cover the issue of the growing backlogs in Administrative Law Judge (ALJ) hearings for people with disabilities who are appealing denial of their claims. DPC staff has continued to work with a broad coalition to urge Congress to ensure that SSA is provided enough funding for its administrative responsibilities, known as its Limitation on Administrative Expenses (LAE). SSA has not received the full amount of necessary administrative funding for many years and the results are evident in the growing backlogs for administrative law judge hearings and other service problems such as unanswered phones at local offices and on the 800 number. The greatest negative impact is on people with disabilities who are waiting years for hearings on their cases. Many lose their homes and their families, have health conditions deteriorate, and die before decisions are finalized. The issue is insufficient funding for the administrative work of SSA.
DPC staff testified on behalf of the Consortium for Citizens with Disabilities Task Force on Social Security at two House hearings: Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, February 28, on The Disability Backlog at the Social Security Administration and the full House Ways and Means Committee, April 23, on Clearing the Disability Backlog Giving the Social Security Administration the Resources It Needs to Provide the Benefits Workers Have Earned. In addition, the Senate Finance Committee held a hearing on May 8 to address More Work, Less Resources: Social Security Field Offices Struggle to Deliver Service to the Public.
Improvements to the ALJ Hearing Process While funding is necessary to address the backlog in hearings and shortfalls in other essential services, Congress and the Administration are continuing to look at other ways to improve efficiency in the hearings process. The House Ways and Means Subcommittee on Social Security held a hearing on September 16 on the Performance of Social Security Administration Appeals Hearing Offices. The DPC assisted in the development of testimony submitted by the Consortium for Citizens with Disabilities Social Security Task Force.
Social Security and Supplemental Security Income (SSI) disability work incentives The Arc and UCP have worked with other members of CCD to monitor the development of proposals that consider policy changes to promote employment among Social Security and SSI disability beneficiaries and potential beneficiaries. The improved Ticket to Work Program regulations were released May 20, 2008.
Other DPC staff continue to work closely with the Administration and the Congress on a host of other Social Security issues, including efforts to secure medical evidence in a more timely manner, improvements to work incentives for people with disabilities, improvement of the process for determining disability for children for the Supplemental Security Income program, and establishment of procedures to expedite more cases through the system.
The Americans with Disabilities Amendments Act (ADAAA), introduced with bi-partisan co-sponsorships in both chambers, was signed into law by President Bush on September 25th, 2008 (P.L. 110-325). This law is designed to remedy a series of court decisions over the life of the ADA which have substantially limited the definition of disability often leaving people "too disabled" in the eyes of their potential or actual employers to do the work and "not disabled enough" to qualify for ADA protection. The ADAAA will make it easier for individuals with disabilities to prove they qualify for protection under the law, including a non-exhaustive list of major life activities and physiological processes will help protect individuals with intellectual and developmental disabilities which cannot be otherwise mitigated
Assistive Technology
There was no legislative action on the Technology Assistance Act. This program continues to be funded at FY 2008 levels under the Continuing Resolution.
Civil Rights
UN Conventionon the Rights of People with Disabilities. Members of the DPC continue to participate in concert with other national and international organizations to strategize ratification of the Convention. This UN Convention aims to clearly articulate the human rights of people with disabilities throughout the world.
ADA Regulations. The DPC provided testimony and written comments in response to the Department of Justice proposed regulatory amendments to Title II and III of the Americans with Disability Act. Interim final rules are expected soon.
Voting. There was lots of activity regarding the November elections including poll monitoring, and get out the vote campaigns. There appeared to not be any systemic problems in voting accessibility Discrimination
Genetic Discrimination. The Genetic Information Non-Discrimination Act (GINA) was signed into law on May 21, 2008 and has important implications to people with disabilities who could be subject to genetic discrimination, particularly in employment and health care coverage.
Victimization. The Matthew Shepard Local Law Enforcement Hate Crimes Prevention Act (H.R. 1592, S. 1105) would have added disability to the list of groups covered under the Hate Crimes Act. The Senate attached this bill to its defense reauthorization bill while the House defense reauthorization bill was silent on the issue.
Senator Biden (D-DE) introduced the "Crime Victims with Disabilities Act" (S. 3668) on October 1, 2008. The legislation would provide grants to states to facilitate collaboration among the criminal justice system and a range of agencies and other organizations that provide services to individuals with disabilities. In addition to increasing the awareness, investigation, prosecution, and prevention of crimes against individuals with a disability--including developmental disabilities--the legislation would also improve services to those who are victimized.
The DPC participated in an ad hoc meeting on violence in the lives of people with disabilities sponsored by the National Resource Center on Domestic Violence (NRCDV). The purpose of this meeting was to discuss the creation of and needed infrastructure for a National Cross-Systems Advocacy Coalition dedicated to violence and disability. Institutionalization.
The DPC has actively opposed H.R.3995, the anti-protection and advocacy organization bill supported by the Voice of the Retarded (VOR) which would require that intermediate care facilities for mental retardation (ICFsMR) receive 90-days notice before a lawsuit could be brought against a facility. In addition, the DPC is an active member of the Alliance to Prevent Restraint, Aversive Interventions, and Seclusion (APRAIS).
Developmental Disabilities
The Administration on Developmental Disabilities (ADD) issued a Notice of Proposed Rule Making (NPRM) regarding the Developmental Disabilities Act (DD Act). This request for comments is seven years late in its delivery and as such includes outdated suggestions contrary to guidance sent by the Agency over the last several years. In concert with other organizations, the DPC submitted comments and met with Hill staff to stress the continued importance of a strong DD Act with the funding and resources to protect and enhance the lives of individuals with disabilities and their families. Final rules have not been published. All Developmental Disabilities Act programs remain funded at FY 2008 levels with the FY 2009 Continuing Resolution.
Emergency Preparedness and Response
DPC staff and other members of the CCD Task Force on Emergency Management met with members of the Department of Homeland Security, FEMA, and the National Council on Disability for an after-action meeting on TOPOFF 4. Top Officials 4 (TOPOFF 4), executed on October 15-19, 2007, was the Nation's fourth terrorism preparedness exercise, involving top officials at every level of government, as well as representatives from the international community and private sector. The DPC is reviewing the inclusion of, response to, and collaboration with the disability community during this exercise. DPC and other organizations of the Consortium for Citizens with Disabilities (CCD) Emergency Management Task Force met with members of the Government Accountability Office (GAO) to discuss its recent report: FEMA Should Take Action to Improve Capacity and Coordination between Government and Voluntary Sectors.
Key findings include: 1. FEMA has not coordinated with the National Council on Disability in the implementation of various initiatives as required by the Post-Katrina Emergency Management Reform Act of 2006. 2. Despite efforts at the national Red Cross level, local agencies are still not fully prepared to serve individuals with disabilities. 3. Local voluntary organizations experienced difficulty getting accurate information about reimbursement Key FEMA staff had not received training on these processes and gave inaccurate information.
Employment, Training, and Wages
Legislation to reauthorize WIA and Vocational Rehabilitation was not introduced in the 110th Congress. The DPC did provide extensive input on a draft Senate bill that included major transition changes for special education students and supported employment improvements, including removing the 18 month time limit for VR funds to be used for supported employment. The DPC provided input to Senate HELP Committee staff regarding the modernization of the Javits-Wagner-O'Day Act and the definition of severe disability. Senator Enzi (R-WY) introduced a bill in June to make significant revisions to JWOD and the Randolph-Sheppard Act. No further action occurred on the bill.
Health Care
State Children's Health Insurance Program (SCHIP) Congressional Democrats failed twice in their attempts to secure enactment of a SCHIP reauthorization bill that would have added 10 million children to the program. President Bush vetoed the measure twice. Instead, the Congress passed the Medicare, Medicaid and SCHIP Extension Act that includes an extension of the SCHIP program through March 31, 2009. SCHIP is expected to be reauthorized early in 2009.
Long-Term Community Services and Supports for Individuals
The Arc and UCP supported the Community Living Assistance Services and Supports Act (CLASS Act), which would establish a national, voluntary, premium-based long-term care insurance program, filling a major void in our national long term care system and helping relieve pressure on Medicaid as the sole payer of long-term care. The CLASS Act was introduced by Senator Edward Kennedy (D-MA) as S. 1758 and Representative Frank Pallone (D-NJ) as H.R. 3001. Working individuals would enroll in the optional program and contribute monthly premiums into a trust fund. The program would not be means-tested. Enrollees would pay premiums for a minimum of 5 years before they could become eligible for benefits. Payment of benefits would be based on functional needs for support rather than diagnosis. There are no lifetime limits on benefits. Also, there would be no underwriting a process that often excludes individuals with disabilities from purchasing private long-term care insurance. In addition, benefits would be paid in cash and the bill specifically allows individuals to hire family caregivers, if desired. The CLASS Act is expected to be a high priority for Senator Kennedy in 2009.
Quality of Services
All actions by Congress and the Administration to change the Medicaid program's requirements will have a significant impact on the availability and quality of services. However, no changes specific to quality assurance were enacted this year.
Tax Policy
As stated earlier in the report, the Congress did very little regarding tax policy in this Session. The Work Opportunity Tax Credit was extended.
DPC staff has been working with other advocates on an effort to create dedicated savings accounts for people with disabilities. Part of the thinking behind these accounts has been to allow parents of children with severe disabilities to plan for their children's futures in the same way that parents can use Section 529 education savings accounts to save for a child's college education. However, there are certain limitations in the 529 accounts and this new effort is also designed to cover both children and adults.
Senators Dodd (D-CT), Casey (D-PA), Hatch (R-UT), and Representative Crenshaw (R-FL) have introduced bills to allow families to create disability savings accounts for their children with disabilities. While the Dodd (S. 2741), Casey-Hatch (S.2743), and Crenshaw (H.R. 2370) bills differ somewhat, the sponsors and supporters of the bills are working together to achieve a common approach. The accounts would be designed for long-term savings to assist an individual with disabilities in meeting his/her future needs. In addition, the contributions to the accounts and the earnings on the investments would have some tax advantages. Finally, an important goal will be to ensure that the disability savings accounts complement the trusts that are already allowed in Medicaid and ensure greater choice for families without limiting existing options.
Transportation
Consistent with our legislative goals, the DPC supported legislation and regulations to make buses, rail stations, boats and other passenger vessels more accessible. The DPC supported P.L. 110-291, Over-the-Road Bus Transportation Accessibility Act of 2007 which provides DOT with additional tools to ensure that curbside carriers and other "over-the-road" buses (OTRBs) are accessible to people with disabilities. The DPC continued to meet with Amtrak about accessibility issues in the rail system. We provided language to Hill staff on a report that Amtrak needs to provide explaining their plan to meet the 2010 Americans with Disabilities Act deadline for making their stations accessible. This provision was included in P.L. 110-432, the Amtrak reauthorization legislation.
Individuals with developmental disabilities and mental illness increasingly enter penal institutions and juvenile justice facilities at higher and higher rates—many due to lack of alternative treatment options. The DPC remains committed to monitoring and responding to regulations as well as advocating for legislation which addresses this critical issue, from preventing discrimination in the criminal justice system leading to unjust incarceration to ensuring appropriate medical treatment and intervention for those who enter the system. The Congress did little to focus on this issue in 2008.
Data Collection
The DPC provided input on testimony given before the House Information Policy, Census and National Archives Subcommittee to expand data collection efforts in the Census and throughout the federal government about people with disabilities.
Foster Care and Adoption
The Fostering Connections to Success and Increasing Adoptions Act of 2008, H.R. 6893, was signed into law on October 7. This bill amends Parts B (Child and Family Services) and E (Federal Payments for Foster Care and Adoption Assistance) of Title IV of the Social Security Act. These changes give states the option to connect and support caregivers who are relatives, improve outcomes for children in foster care, provide for tribal foster care and adoption access, and improve incentives for adoption. It also authorizes the Secretary of Health and Human Services to make matching grants to state, local, or tribal child welfare agencies and experienced private nonprofit organizations to help children in, or at risk of entering, foster care to reconnect with family members..
Habilitation
The provision of habilitation services through the rehabilitation option in the states' Medicaid plan continued to come under fire from the Centers for Medicare and Medicaid Services. Our efforts this year centered on preserving the ability of states to provide habilitation services through the Medicaid option for rehabilitation services.. Currently, CMS is under a moratorium and is prevented from disallowing payment for such expenditures until April 1, 2009.
Immigration and Naturalization
The DPC has been working with advocates from the immigration and refugee/asylees community and the Social Security Administration regarding implementation of the SSI Extension for Elderly and Disabled Refugees Act, P.L. 110-328.
Liability Insurance Protections
Congress took no action on this topic related to disability.
Non-Profit Organizations
Non profit organizations that lobby the Congress are affected by the Honest Leadership and Open Government Act that was signed into law in 2007. Affected organizations are now to file more concise reports to the Congress on their lobbying activities and expenditures. The reports are now done quarterly. Violations of the lobbying law can now result in criminal penalties. United Cerebral Palsy and The Arc of the U.S. will need to fulfill the requirements of the new law.
Research and Prevention
All disability research and prevention programs at all federal agencies including the National Institute of Health's Eunice Kennedy Shriver National Institute of Child Health and Human Development and the Centers for Disease Control and Prevention's Center on Birth Defects and Developmental Disabilities are frozen at FY 2008 levels and funded under the FY 2009 Continuing Resolution. SOCIAL SERVICES The Title XX Social Services Block Grant continues being funded at $1.7 billion under the FY 2009 Continuing Resolution. That amount is identical to the program's funding level for the past several years.
Temporary Assistance for Needy Families (TANF)
The final regulations were published in February implementing the TANF reauthorization that was included in the Deficit Reduction Act. The regulations contain very minor improvements for people with disabilities. The problems the disability community had with the interim regulations remain and the improvements that are addressed in S. 1730 the Pathways to Independence Act of 2007 are still needed. S. 1730 was introduced by Senator Gordon Smith (R-OR) and had 8 other Senate sponsors. No action was taken on S. 1730.
Shortly after the election, President-elect Obama established his process for the transition to his Administration taking over White House operations on January 20, 2009. Federal agency and policy teams were established. The Arc and United Cerebral Palsy CEOs and staff of the Disability Policy Collaboration met numerous times with various transition teams to review federal policies that affect children and adults with intellectual and developmental disabilities and their families. Topics and agencies covered in these meetings include Social Security, Medicaid, health care, long term services and supports, housing, education, direct support workers, family support, employment and civil rights. It is hoped that these meetings will provide a head start for The Arc's and UCP's federal policy agenda as the new Administration and the new Congress start up in January, 2009.
FY 2008 Appropriations: Labor, HHS, Education, Social Security, HUD, Transportation and FY 2009 Administration Budget Request
Federal Programs by Agency
FY 2008 Final
FY 2009 President
Department of Labor
Adult Employment
849.1
712.0*
Youth Activities
924.1
891.0*
Work Incentives Grants
14.4
0
Office of Disability Employment Policy
27.2
12.0
Department of Health and Human Services
Basic State Grants Councils on DD
72.5
72.5
Protection & Advocacy (P & A) - DD
39.0
39.0
University Centers for Excellence in DD
36.9
36.9
Projects of National Significance (PNS)
14.2**
14.2
State Grants to Remove Barriers to Voting
12.2
12.2
P & A for Voting Access
5.3
5.3
Lifespan Respite Care Act
0
0
Maternal & Child Health Block Grant
666.2
666.2
Autism and other Developmental Disorders
36.4
36.4
CDC Center on Birth Defects, DD
129.6
126.7
National Institute for Child Health and Human Development
1,254.7
1,255.7
National Institute for Neurological Disorders and Stroke
1,543.9
1,5444.9
Social Services Block Grant
1,700.0
1,200.0
Child Care & Development Block Grant
2,062.1
2,062.1
Department of Education
IDEA Part B State & Local Grants
10,947.5
11,284.5
IDEA Preschool Grants
374.1
374.1
IDEA Part C Early Intervention
435.7
435.7
IDEA Personnel Preparation
88.2
88.2
Parent Information Centers
26.5
26.5
Vocational Rehabilitation State Grant
2,874.0
2,874.0
Rehabilitation Training
37.8
37.8
P&A for Individual Rights
16.2
16.2
Supported Employment State Grant
29.2
0
National Institute for Disability & Rehabilitation Research (NIDRR)
105.7
105.7
State Assistive Technology Programs
24.7
25.7
P&A for Assistive Technology
4.2
0
Social Security Administration
Limitation on Administrative Expenses
9,745
10,327
Housing and Urban Development
Section 811 Supportive Housing
237.0
160.0
Section 8 Rental Assistance
14,700.0
14,000.0
Transportation
Section 5310--Elderly & People with Disabilities.
127.0
133.5
Section 5317--New Freedom Program
87.5
92.5
*DOL is again proposing to eliminate separate appropriations for the adult and youth programs in WIA and use the funding to support Career Advancement Accounts
* *The PNS total includes $2 million for a National Clearinghouse and Technical Assistance Center for Family Support.
Annual Report
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